Tuesday, February 25, 2014

Gracious Wisdom: A perspective on having a sibling with Down syndrome

A few months ago, Emily stole a photo of Ellie for her blog.  Okay, technically she asked my permission and this spurred a series of email conversations between the two of us.  Emily is a biomedical engineering student (a smart cookie!) who keeps her plate full by babysitting children with special needs who she affectionately refers to as her "main squeezes" and volunteering for the Special Olympics.  Did I mention that she also has a beautiful little sister with Down syndrome? Seeing as I have no experience in growing up with a sibling rocking an extra chromosome, I asked Emily to write a post about her life growing up with her sister Sophie.  Emily's writing is full of raw honesty.  You can learn more about Emily, her sister, and her "main squeezes" at her blog.

Gracious Wisdom

Last night, I turned on Godspeed by the Dixie Chicks and cried.  It was one of those lonely, exhausted cries that come at the realization that nothing that will fix the thing that is broken. There was nothing to do after but take a hot shower and sleep.

Yesterday, I was reminded that no matter how hard I work, how much I give to others, how seemingly perfect I am, I cannot fix my sister.  Sometimes I forget – I don’t see her or think of her as a kid with a disability – and reminders always come in the form of she-will-never-do-such-and-such. Such moments of clarity are crushing and empty.   In truth, even when I am at my happiest and most fulfilled, there is still a piece of my heart that is broken.   I would give my life if it meant my sister could have all of the opportunities and abilities that I have had.  I want to make her happy.  I want to see her loved.  I want to fix her.

I love her with every inch of my being.

I have three very clear memories of my mother’s pregnancy with my youngest sister.

The first was the evening that I found out we would be having another baby.  I was in my bedroom.  I was eight years old.  Mom and Dad came in and tacked an ultrasound picture on my corkboard. All I remember is the little picture and thinking that it might be cool to have a brother.

The second was a nightmare.  Rather, a series of repeated nightmares.  My mother had a miscarriage.  The baby died.  I was terrified, and remember feeling sure that the dreams would come true.   I felt distinct terror at the possibility of losing my unborn sister.

The third was the day that I found out that there was something wrong.  This is the clearest memory of all others from my childhood.  It stands out like a huge pine tree in the middle of a flat plain.  I am so very grateful for this, because I believe it is the single most defining moment in my life thus far.

My parents asked me to take a walk with them.  We didn’t go far, just to the stop sign at the end of our cul-de-sac.  They stopped and looked at me.  “There’s something we have to tell you about the baby.” I started crying before the sentence was over.  She was dead.  Just like in my nightmares, my little sister was stripped from life and I would never have her.  I was sobbing before my parents even began to tell me what was wrong.

When we walked back to the house, relief was already spreading through me.  In fact, I’ll admit that I was thrilled. I had no idea what Down syndrome was.  My parents were upset and had cried as they told me, but extra chromosome or not, I was getting a sister.   She was alive and that was the most important part.

I’ve never told anyone that I want to fix her.   I share it now because I want to be as honest and real as possible in this post.   But I also love my youngest sister exactly the way she is.  She is the center of my universe, and I think that that started even before she was born.  The fact that I was relieved upon first hearing her diagnosis, that I didn’t care how she came out as long as she was alive, continues to strongly contribute to the way I think about her and her disability.  I cannot fix her, but I am unbelievably blessed and grateful to even have her.

We picked her name after we got the diagnosis.  After much family discussion and perusal of baby name books, Mom and Dad ended on Sophie Anne.  It means gracious wisdom.

Sophie was born a day before my half-birthday.  I threw up in the car when our grandparents drove me and my other sister, Mari, there.  My dad did Tai Chi outside the hospital. She went straight into surgery within 24 hours.  She was in the NICU for six weeks.  There were tubes everywhere.  We celebrated her first poop.  Mari and I built a mini NICU in our basement, with babydolls covered in real tubes, which were attached with real medical adhesive, all donated to the cause by NICU nurses.  The lite-brite became an ECG monitor.  I think it was our way of making sense of the situation.  I had several friends with new siblings.  All of them came home within the first few days.  Mine didn’t.

The rest of my childhood was marked by therapy appointments, IEPs, and Buddy Walks.  The vague memories that I have are overwhelmingly positive.  My sisters and I were close, my parents were involved and supportive, and Sophie united us all against the rest-of-the-world-that-didn’t-understand.  I know that my parents were very stressed, but I didn’t realize that when I was younger.  I think that speaks volumes to how incredible both of them are.   It takes a very special person to parent a child with special needs and two other siblings and have them all turn out as happy, loving, and resilient as we all are.

How has Sophie affected my life?  Sophie has become my life.  So many of my actions, and so much of my personality has been beautifully molded by the bond I have with her.  I wouldn’t have it any other way.  My passions, my future goals, and my current projects and priorities are so embedded in my love for her and all individuals with disabilities.  While in college, I have pursued opportunities to work on projects involving disability rights and access to services, worked with a multitude of children and adults with special needs in various settings, and promoted equality and acceptance for everyone.  After I graduate from college, I plan to go on to pursue a graduate degree in Occupational Therapy and plan to work in pediatric settings with kids of all disabilities.  Being an OT means that I will work with kids to allow them to be as independent as possible, and to pursue fulfilling, meaningful relationships, jobs, and hobbies throughout their life.  Right now, I’m working on becoming involved in the National Down Syndrome Society’s advocacy program, which promotes legislation, like the ABLE Act, that supports social programs and rights for people with Down syndrome and all other disabilities.

But I also learned some hard truths about what is often an unfair world at a young age.  Why do bad things happen to good people?   Why can’t I have a normal family? Why can’t I fix my sister?

I don’t think I’ve ever shared with anyone how truly painful the experience of loving someone with mental or physical limitations can be.  I cannot escape this reality, and I am also powerless to make her ‘better’.  My friends don’t really know that Sophie is struggling in school. Math is very, very hard.  She doesn’t like to read.  She is also almost exclusively in a Special Ed classroom now.  I say, “My sister has Down syndrome – but she’s very high functioning!”  Sophie is bright in many ways, and she is high-functioning, but she also struggles.  A lot.  And I am terrified to admit that to anyone because it will make it real. I always had hoped that Sophie would be the exception to the rule.  She would break down all of life’s barriers, graduate from a 4-year college, become a self-advocate for change and a leader in disability rights.   Maybe she still will.  But she will always have Down syndrome, and I am only just now beginning to understand what that means.

In conclusion, a note to my fellow ‘Sibs’:

The other day, I held the little sister of a boy with regressive autism in my arms.  She is five and I see so much of myself in her.  The patience, compassion and love that she has not only for her older brother, but for all of his classmates, shows wisdom and maturity well beyond her years.  Selfless as she is, I see that she is lonely and always looking for more attention at home.  I held her because the weight of that loneliness was too much that day.  She was so sad.  I told her that I loved her and that I understood.  But the most important thing was just that I took time to hold her.

Being a sibling is hard.  It can often be beautiful and rewarding, but is also isolating and painful.  I think that it defines us, unites us, and makes us into some of the strongest and most compassionate people there are.  I have a deep, protective love for each of you, whether or not we have ever met or ever will.  You are important, valuable, and part of one of the most accepting communities there is.

Winston Churchill once said, “Never give in, never, never, never, in nothing great or small, large or petty – never give in except to convictions of honor and good sense.  Never yield to force.  Never yield to the apparently overwhelming might of the enemy.”  Life will be overwhelmingly difficult and sad sometimes, but you will emerge shining all the brighter!  Never give up.

Here’s a short video compilation I put together of Sophie: 

Monday, February 17, 2014


I seem to keep finding Tama Kitty and Ellie in the same places.  Is it possibly that my little girl's nimble climbing skills and crazy wind-up energy are the result of her being part-cat?

Top Photo: yes, that is Vaseline smeared all over the top of the dresser.

Trouble. . . Double Trouble


Thursday, February 13, 2014

Happy Valentine's Day from The Bear

I had great plans to conduct an Ellie Bear photo shoot in honor of Valentine's Day.  She was rocking her adorable ruffle skirt and her shirt that was two sizes too big (it had an umbrella and a dog and sparkle hearts and it only came in big girl sizes).  She even let me put a bow in her hair.

Stink eye.

Stink eye.

What on earth is Mama doing?

Ah a smile!  Actually, a gleeful cackle as she runs away from me.

Happy Valentine's Day, y'all.

Ellie Bear of Valentines Past

Lower Right: Tama Cat photo bomb


Wednesday, February 12, 2014

Head Bonk + Sexy Husband = DIY Oak Table

Valentine's Day 2013 did not go as planned.  Not that we really had any plans, but hanging out in an ambulance followed by an evening in the ER is not my idea of romance (especially seeing we did not even have a hot EMT).  Oh those gurneys are just so sexy.  Hospital bracelets are a girl's dream for jewelry.

February 14, 2013

Anyway, February 14th was when my precocious little monkey decided to practice her gymnastics by catapulting herself off of the kitchen chair during an ABA therapy session.  She proceed to turn purple, stop breathing, and have a grand map seizure (I may have gotten the order of that wrong).  Ellie Bear is okay and I would like to say that she learned her lesson, but no.  Girlfriend likes to live on the edge.  What does this have to do with a oak table, you ask?

I am getting to that.

You see, our kitchen table is counter height.  As such, our chairs, which the Bear sky-dived off of are atypically high.  I exclaimed to my husband after the head bonk accident "we ARE getting a traditional kitchen table!" since I knew Ellie would continue her climbing escapades.  Andrew agreed. . .

Case Made: Wild Child on the table

. . . only he insisted on making the kitchen table himself.

Now, for those of you who know my blonde hair, blue-eyed husband with buns of steel, he is Mr. DIY Procrastinator.  Yeah, sure, make the kitchen table.  I have no doubt of his carpenter abilities.  I do doubt his ability to finish the project completely and in a timely manner (let's review to Andrew's solution to the mold in our master bath).  Andrew's definition of timely is quite different than my definition.

So, here we are just shy of 11 months later and I present the kitchen table!

Oh wait, first I need to show the progress.  You see, he had to build a work bench before he could make the table.  Apparently, this work bench was imperative to constructing the table.  Okay.  I don't do DIY wood work.  I cannot be trusted with a saw or a hammer or a screw driver.  Yet, I trusted his whole "I need to make a work bench so I can make the table" thing.  There had to be room for clamps and tracks and cords, and other manly sounding carpenter accessories.

The work bench took a while, but then he constructed this table in 10 seconds flat.  Well, more like 10 days, BUT it didn't take months or years.  Plus, I got to pick out each piece of oak paneling used in this table.  Oooh la la. Now Mr. Toolbelt needs to get cracking on the bench that is going to accompany this table.

Did I mention that he needs to modify the workbench before he can built the seating bench?  Fortunately, we bought some chairs to tie us over in the mean time.

Look!  We are eating at the table.  Look!  My little vegetarian is eating a rib!


Monday, February 10, 2014

The Origin of Her Name

There is a quiz circulating around on Facebook--Which Pixar movie are you?.  I am a sucker for quizzes.  No matter how wonky they are.  I took the quiz and was so happy that I am the movie "Up".  You see, not only do I LOVE that movie.  That movie is what caused Andrew and I to name our daughter Ellie.

Yes, my daughter is named after a cartoon character.

In the movie Up, the Carl ,old man with his house and balloons, is still madly in love with his deceased wife, Ellie.  He knew her as a child.  She was an adventurer.  She had spunk.  Grit.  They were best friends and then soul mates.  They dreamed of traveling.  They never did travel.  She passed away and he decided to fulfill their dream.  His love for Ellie was so strong.

When Ellie was born, we named her Nadja Marie.  We had two names picked out--Nadja and Silva--and we decided to wait until delivery to "see what she looked like".  Silva is my MIL's middle name and Marie is my mother's.  We also like Nadja.  (Have I even mentioned that my hubby has deep Croatian roots?) I wanted Alma, but Andrew gave me a resounding "NO!".  He told me I could name our next dog Alma.  Gee thanks.

Anyway, Andrew thought she looked more like a Nadja than a Silva.  When it came time to fill out the birth certificate, we both thought "um, so uh, she really doesn't look like a Nadja".  Mind you, this is after my FIL announced on Facebook the birth of Nadja with all of her birth stats.  Oops.

We named her Ellie to reflect our undying love for her.  We thought she would be spunky and "an adventurer" (oh goodness, we were right on the spunky).  So, we have Ellie Marie.  Who now thinks her name is Bear and Chunky Chicken and Chick-a-Boom, Chunky Love, and Turkey Bear.

Wednesday, February 5, 2014

My other daughter

I know it has been a long while since I have written about Reece's Rainbow or the plight of orphans over in Eastern Europe.  Yet, they are never far from my mind.  It has just been too hard.  Too difficult.  Too heartbreaking for me to write about my other daughter.  My Tabitha.

While circumstances prevented Andrew and I from adopting my beautiful Tabby, I rejoiced when her forever family found her.  I was excited as I anticipated her being "an orphan no more".  To know a mother's love.  To be held.  To be properly fed and nourished in both body and in soul.  To be read to. Sang to.  While I couldn't be her true mommy, I felt such relief knowing that she would soon have one.

It wasn't meant to be.

The day when Putin banned all American-Russian adoptions, my heart plummeted. A spirited, red-head girl with a little something extra would be trapped.  Trapped in that orphanage.  Her forever family unable to reach her.  What if Andrew and I tried harder?  Would we have been successful?  Would we have had her out of there and secure in our homes before this ban?  What if I lied about my history of depression and anxiety?  Would we have been allowed to adopt then?  What if?  What if?  I feel so guilty.

A child, my child sentenced to a life without a mother and father.

Is she loved?

Is she receiving affection?

Is she receiving enough food and water?

Is she receiving proper medical care?

Does she have friends?

Is she warm enough at night?

My Tabitha turns 4 years-old this May.  As many of you know, this means "imminent transfer".  Transfer to a mental institution.  As many of you know, this is a horrendous sentence.  Wasting away.  

(Read Katie's story from The Blessing of Verity--a 9 year-old girl rescued from an institution)

I couldn't write about her.  Because you see, if I wrote about Tabby, it meant it was/is real. It solidified that her forever family wasn't coming for her.  With tears streaming down my face, I beg you to please pray for my other daughter.  Pray for her and let us not forget that while our country has come a long way (and still has a ways to go) in our treatment and views of children with disabilities, many other countries still shuttle them away from the public eye.  Labeling them as "unworthy".

So yes, I haven't written about these children in a long time, but I have been thinking about them daily. My heart ever so heavy.  Breaking for these kids.  For my Tabitha.  

Monday, February 3, 2014

A True Texan

On Thursdays, Ellie goes to the library with her class. Most of the time I have no idea as to why she has chosen whatever book she comes home with as she shows no interest in it during its week long stay at our house. Then she came home with this book:

I know she picked it out.  She was really excited to point at the pictures on every page.

This book is proof that my little Bear is a true Texan.  Made and born in Texas.  Now, of course, each picture was followed by her announcing "Dada".

Yes, we are a truck family.  Our Tundras were designed and manufactured in San Antonio.  Yes, plural.  We used to own two trucks at the same time.  You know, HIS and HER trucks. Then I became all mother-like and got a more family-oriented car which I affectionately refer to as the "swagger mobile" and Andrew drives my old Tundra.  In Ellie's eyes, trucks = Daddy (and Mommy = boring)

Baby Girl doesn't remember when I used to hoist her infant carrier in an out of this monster truck.


A mask for kids with Down syndrome

Do you hear crickets?  Yes, we are here!  We are alive!  We are safe and healthy!  We haven't been inside a restaurant or store since m...